Shirley A. O'Leary, RN, MSCN; J. Theodore Phillips, MD, PhD
Medscape Neurology & Neurosurgery. 2007; ©2007 Medscape
The varying diversity and severity of multiple sclerosis (MS) that affects the quality of life in young, child-rearing, and career-developing persons presents significant challenges to the healthcare professional. Neurologists, nurses, physical and occupational therapists, urologists, and primary care physicians are only a few among the vast interdisciplinary team who endeavor to not only evaluate but also strive to positively affect the quality of life in MS patients. As recent years have provided us with disease-modifying agents and improved options for symptom management, this previously elusive goal has become increasingly more tangible.
The Impact of Disease-Modifying Therapies
Optimization is the "act, process, or methodology of making something as fully perfect, functional, or effective as possible". Prior to the advent of FDA-approved disease-modifying agents a mere 14 years ago (eg, interferon betas, glatiramer acetate, mitoxantrone, and natalizumab), optimization was not a term used in the discussion of MS. Now a paradigm shift is taking place.
Over the years, much attention has been devoted to the development of various tools with which to measure the quality of life in MS patients. One such tool, the Multiple Sclerosis Quality of Life Inventory (MSQLI), is a questionnaire that offers healthcare professionals a construct in which to view individual areas of concern as well as areas of stability. The MSQLI is a health-related quality-of-life assessment particular to MS and contains not only generic but also disease-specific components. To truly optimize the quality of life in persons with MS, it is imperative that healthcare professionals grasp the impact that these disease-specific components have in the lives of persons with MS, especially concerning those individuals without adequate coping strategies. Clearly, understanding each person's individual level of satisfaction with his or her perceived quality of life should translate to productive interventions.
Along with innovative symptom management, truly life-altering disease-modifying therapies have created an environment of a supportive, self-efficacious, and wellness-focused MS population. Acknowledging that persons with MS have a fairly close to normal life expectancy and that the optimal goal of the currently available disease-modifying therapies is to slow the accumulation of disability over the disease course, rather than to cure, reiterates the importance of their impact on quality of life. Our role here, as healthcare partners, is to not only assist in treatment selection but to also provide education on realistic expectations, injection strategies (if applicable), and side-effect management. For instance, we and others have found that utilization of various prophylactic medications for interferon therapy-related side effects and injection-site management strategies, as well as dose titration consideration and timing, are necessary to insure successful treatment adherence and optimal outcomes. Ortega and colleagues recently reported significantly reduced injection-site reactions after the application of warm compresses prior to injection of glatiramer acetate. Failure to partner, support, and problem-solve with patients in important arenas such as these will most assuredly lead to patient dissatisfaction, perceived treatment intolerability, and discontinuation of therapy, thus potentiating a negative impact on quality of life.
Challenges Beyond Disease-Modifying Therapies
Additionally, challenges to the healthcare professional to optimize the quality of life go far beyond the disease-modifying therapies. MS is a disease that comprises a complex variety of symptoms that, while possessing some commonalities, often vary widely in their presentation from person to person. Concerns such as bowel/bladder dysfunction, fatigue, cognitive deficits, spasticity, tremor, sexual dysfunction, and sensation disturbance are among some of the quality-of-life detractors that persons with MS may deal with throughout their lifetime. The remainder of this discussion will focus on potentially beneficial interventions relating to some of these problems.
One important caveat worthy of mention in any discussion of MS quality-of-life optimization is the likening to the ripple effect of the proverbial pebble cast into the pond which results in an ever-widening, far-reaching cascade. One symptom contributes to another and, sometimes counterintuitively, medication used to improve certain symptoms may contribute to the worsening of other symptoms. For instance, medications that have significant benefits on spasticity, tremor, or sensation disturbance can often lead to exaggeration of fatigue, increased issues with concentration and memory, and even depression. Awareness of these complicated interactions motivates healthcare professionals to look for innovative medication management personally tailored to optimize quality of life, such as combining lower doses of several medications as opposed to high doses of a single medication, in an effort to reduce side effects. In MS rehabilitation therapy, an educational strategy, in the form of energy conservation, is used to facilitate changes in behavior, hopefully minimizing fatigue impact . However, mediation of fatigue in any one individual is not the same in the next; comorbid conditions such as anemia or thyroid disorders, unrealistic work expectations and schedules with extensive recreational activities, along with a myriad of other psychosocial concerns may be factors to consider for some individuals but not all. Use of open verbal and nonverbal communication skills is necessary to elicit all factors contributing to fatigue.
The Goldman Consensus Group reported that the rate of major depression is significantly higher in the MS population when compared with the US population at large. Furthermore, this group reported higher rates of depression in MS patients compared with other chronic disease states. This likely comes as no surprise to healthcare providers who interact with MS patients on a daily basis. Nor does it seem surprising that depression is just as likely to be problematic in a newly diagnosed patient with minimal neurologic impairment as in those profoundly affected. As mentioned above, depression, cognitive function, fatigue, and medication side effects often can be interrelated. Of note, depression is not unique to MS; those persons without adequate life coping skills or intact family/community support, or who have low levels of self-esteem or family histories of depression, may be at much higher risk and consequently more likely to succumb to depressive syndromes. Clearly, in order to optimize quality of life for patients, healthcare providers must take the time to identify those at risk for depression and develop interventions, both through counseling and pharmacologic management.
Coping Strategies, Health Behavior, and Psychological Adjustment
A broad discussion of optimizing quality of life would be incomplete without reference to coping strategies, theory of health behavior, and psychological adjustment. These factors and the therapeutic interventions developed in response are of paramount importance to patient outcomes -- and ultimately quality of life.
Health-related behavioral theories comprise the selection of a theory that brings an enlightened perspective to the problem at hand and is developed after thorough assessment of the need. The Health Belief Model is one of several health-related behavioral theories that have been used to both assess and explain health-related behaviors. In the 1950s, this model was developed by the US Public Health Department to evaluate nonadherence to preventative measures for asymptomatic diseases. There are 4 basic components to this theory: (1) the person's perceived susceptibility to acquiring a condition; (2) the perceived belief in the severity of the condition (consequences); (3) the perceived benefits of treatment or actions to decrease negative effect; and (4) the perceived barriers to treatment, such as cost. Added to the basic 4 components in subsequent years were cues to action (such as advertisement and physician reminder calls) and self-efficacy. Utilization of this model by healthcare professionals can be quite helpful in the arena of adherence to disease-modifying agents. Through education and partnering, healthcare professionals can concretely communicate the consequences and implications of no therapy (perceived severity), relate evidence-based outcomes of therapy (perceived benefit), and strive to minimize cost concerns, explain risk vs benefit, and involve family members (perceived barriers). Nursing care especially provides substantial impact on cues to action andself-efficacy through a comprehensive plan of care geared toward optimizing quality of life.
For many persons with MS, the unpredictability of exacerbations, extent of recovery, and impact of residual symptoms on daily life can challenge coping mechanisms. McCabe and colleagues noted that persons who engaged in more emotion-focused coping styles (wishful thinking) were more likely to experience poor psychological adjustment than were those who employed more problem-focused strategies. They demonstrated that women in general, both with and without MS, were more likely to focus on the positive and seek social support than were men, and that levels of fatigue and medication impact were factors in psychological adjustment and coping. There are numerous variables that affect any one individual's ability to psychologically adjust to a lifelong chronic disease. Aside from MS-related variables such as fatigue, cognition, depression, and medication effects, which affect coping strategies, there are factors related to family of origin. Some of these include -- but are not limited to -- cultural, ethnic, spiritual, and socioeconomic backgrounds, as well as family support. All of these factors need to be considered when generating an effective care plan for optimizing quality of life in MS.
In summary, everything we do as members of a collaborative interdisciplinary healthcare team is targeted at optimizing the quality of life of those persons living with MS. As strides are made in optimistic pursuit of new treatment modalities and strategies, it is important for healthcare professionals to "pass it on." Pass it on to patients, and their families, friends, coworkers, other healthcare providers, and the community at large. Educate and teach so that MS patients do not cope by wishful thinking but have access to others who can problem-solve with them, who are prepared to "act, process and make something as functional and as effective as possible." It's called optimization; pass it on.
Supported by an independent educational grant from Biogen